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Ethan's New Heart

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UPDATE:  ETHAN'S LAST WISH

Ethan’s parent’s would like to thank everyone who has donated. It has meant so much to be able to set aside the worry over finances and focus on being there for Ethan. They have each managed to keep working on a reduced schedule and arranged their time so that Ethan is never without family for more than a few hours.  Ethan really appreciates having his parents with him as he has  faced  these challenges.

Ethan has however taken a turn for the worse.  His transplant was very successful, his new heart is working well.  The problem has become the weakened state that his system was in prior to the transplant.  With the artificial heart being in for so long, his kidneys shutting down and being on the intubation tube for such a long time this has all taken a toll on his battered body.  Infection has set in and is gaining speed.  The antibiotics are no match for these horrible infections with his weakened immune system.  The doctors have told Lane and Shirley that they need to prepare themselves and Ethan for the inevitable.  Ethan cannot beat this.  As wonderful as the staff at Chirldrens Hospital has been Ethan does not want to spend his last days at the hospital.   Ethan's one last request is to be taken home.  Once home Ethan will only have a day or two at most.  They will need to transport him home at the very least by ambulance and then set him up to be as comfortable as possible in his own home. This will mean additional services and perhaps a physician in attendance.

So I am revisiting this Go Fund Me to thank everyone for their generous donations and  also say if you would like to help us in granting Ethan his last wish we would be most grateful.  We are not sure of the costs associated with this move, we are looking at hospice too.  The hospital to home is a two hour trip by car or about the same by ferry.   We do not believe that insurance will cover the cost of most of this so getting Ethan home will fall to his loved ones.  Thank you all for your support on this 9 month journey.   With breaking hearts Lane and Shirley want to say goodbye to their son as best they can.

God bless and keep each of you. Your support and prayers have made an amazing difference to us on this long, long road.  Any funds not used for getting Ethan home will be donated to Seattle Children's Hospital in Ethan's name.  Many thanks from Ethan's family.


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Ethan was born 1/27/98 and was soon diagnosed with Hypertrophic Cardiomyopathy.  He has been fighting this disease his entire life. At 3 yrs old he was required to have a defibrillator with him at all times.  The thing was nearly as big as  him. ICD/pace maker was surgically implanted into his chest at the age of 11 (2009).  Recently his cardiologist determined that his heart was weakening.  A surgery was performed on January 16th, 2018 with the hopes of getting his heart to last a few more years.  Ethan enjoyed several mobile days  until that Friday afternoon when his heart decided to stop working and Ethan suffered a major heart attack.  Emergency CPR preformed by the amazing staff at Children's Hospital in Seattle gave them enough time to get him hooked up to the heart/lung machine. Ethan's heart was just too sick to go on any longer.  This last week Ethan underwent another surgery where they removed the bottom part of his heart and installed a Total Artificial Heart.  This should give Ethan more time to be offered a donor heart.  Until that time Ethan will remain in Children's Hospital on the ICU ward.  Ethan's family, understandably, are remaining close and hopeful.  His parents are spending as much time as possible with him and missing a lot of work. The expenses being incurred by this family will be astronomical.  Even after Ethan receives his new heart the recovery therapy and the fact that they have to live within 1 hour of the hospital for awhile will continue to drain the resources of this family.  Ethan is a bright and courageous young man.  He is like many other young people; hanging with friends, listening to music and hoping to continue going to college.  He loves his big brothers and is really close with his parents.  He has overcome many obstacles in his short life that none of us could even imagine.  No parent ever wants to think about their child having to face something like this. If you could help us relieve a portion of the stress on this family and donate to this fund a wonderful young man and his parents will be very grateful.  Your prayers and positive thoughts are appreciated.

Donations 

  • Anonymous
    • $50 
    • 6 yrs

Organizer and beneficiary

Lola Bowler
Organizer
Buckley, WA
Lane DeLarme
Beneficiary

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